MYELOMA REGISTRY

From the Austrian to an International

THE INTERNATIONAL MYELOMA REGISTRY (IMR)

The Multiple Myeloma Registry is an important quality assurance tool for implementing and reviewing guidelines and their efficacy in regional, national and multinational patient populations, the assessment of adverse reactions in large patient populations outside a clinical trial and pharmacoeconomic analysis under “real life” conditions.

IMR - High quality patient data

The Multiple Myeloma Registry is an important quality assurance tool for implementing and reviewing guidelines and their efficacy in regional, national and multinational patient populations. The registry provides scientists and attending physicians with access to a huge sample of myeloma patient records.

This data allow us the assessment of adverse reactions in large patient populations outside clinical trials.

History

The Austrian Myeloma Registry (AMR) is an initiative within the framework of health services research and quality control under the patronage of the Austrian Society of Hematology & Medical Oncology (OeGHO).
The development took place in 2008 within the COMET programs Oncotyrol I and II with additive funding through donations from the pharmaceutical industry and the non-profit Tyrolean Association for the Advancement of Cancer Research e.V.

01.

Quality

The shift from acute cancer care to treating cancer as a chronic disease, quality assurance (QA) is becoming increasingly important in the medical treatment of cancer patients. Therefore, the registry provied valide longitudinal data from a large patient population under ‘real life’ conditions.

02.

Challenge

Increasing complexity of modern diagnostics and therapy, the international recognition and dissemination of evidence-based treatment guidelines and the increased interest of patients, doctors and socual insurance companies in the transparency of services and the results of medical care.

03.

Innovations

Linking Clinical Patient Data & Patient Reported Outcomes.

Monitoring of patients at home to improve early detection of clinically important problems for personalized therapy guidance.

Analysis of comparative effectiveness of medical interventions including the patient’s perspective.

Individualized feedback tool to inform patients about their current conditions and tips for improvement of subjective well-being for improved patient compliance and therapy outcome.

Increased efficiency of hospital units.

04.

Safety

Secure, accessible, and efficient storage of data is paramount for the success of clinical trials specifically and the usage of software systems in daily clinical routine in general. In the context of systems recording their data electronically, this results in distinct requirements for securing the servers that are used for data collection.

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